Where to begin

This has been a crazy week. Maggie continues to impress every chance she’s given. She’s walking down the stairs by herself now. Most of the time she holds the railing, but tonight, she just walked. By herself. That’s something she couldn’t do a month ago. We saw this video of a girl with atypical Rett (which is, by the way, different from what Maggie has, which is typical Rett) (Skip to 9:22 for the stair walking bit…)

and said, if she can do that, so can Maggie. And now Maggie can. See:

She squats to sit now and can even hold that position. Not for a long time. And not always, but we’re getting there. Squatting is one of those things that Jenny’s been trying to get her to do for two years. When she couldn’t, Jenny knew there was something wrong. My reaction was “Of course she’s going to squat eventually. It’s not like she’ll never squat.” I was wrong. With Rett, it is certainly possible that she never would have squatted, or since very briefly before her regression she was able to, she would never relearn that skill. But she has so far. So far, we’re beating it back.

Her cognition and reception has also been surprising us in the most spectacular ways. It used to be a chore to get her to listen to any single step direction. She’s listening to two and sometimes even three step directions now. Even better has been watching her process things. Presented with minor puzzles, she’s been conquering them. Jenny asked her if she wanted her bracelets and Maggie walked over to the tub that contains her bracelets, opened the tupperware and took out her bracelets. It would have been easier for most kids to say, “Yes, please,” but unfortunately that’s still difficult for her. So showing that she fully understands is her form of communication and we’ll take it.

Sleeping which used to be a two hour fight, has turned into a 45 minute conversation. We aim to get that to 30 minutes and feel like that’s probably less of a fight than most of my friends have with their 3 year olds.